Four health data networks illustrate the potential for a shared national multipurpose big-data network.

Information in electronic health data that are drawn from large populations of patients is transforming health care, public health practice, and clinical research. This article describes our experience in developing data networks that repurpose electronic health records and administrative data. The four programs we feature are the Food and Drug Administration's Mini-Sentinel program (which focuses on medical product safety), the National Patient-Centered Clinical Research Network (PCORnet, comparative effectiveness research), the National Institutes of Health's Health Care Systems Research Collaboratory Distributed Research Network (biomedical research), and ESPnet (public health surveillance). Challenges to these uses of electronic health data include understanding the factors driving the collection, coding, and preservation of the data; the extensive customization of different systems that collect similar data; the fragmentation of the US health care delivery system and its records; and privacy and proprietary considerations. We view these four programs as examples of the first stage in the development of a shared national big-data resource that leverages the investments of many agencies and organizations for the benefit of multiple networks and users.

[1]  Marsha A Raebel,et al.  Design considerations, architecture, and use of the Mini‐Sentinel distributed data system , 2012, Pharmacoepidemiology and drug safety.

[2]  Adrian F Hernandez,et al.  Linking inpatient clinical registry data to Medicare claims data using indirect identifiers. , 2009, American heart journal.

[3]  J. Steiner,et al.  A pragmatic framework for single-site and multisite data quality assessment in electronic health record-based clinical research. , 2012, Medical care.

[4]  M. Klompas The paradox of ventilator-associated pneumonia prevention measures , 2009, Critical care.

[5]  Harlan M Krumholz,et al.  National and regional trends in heart failure hospitalization and mortality rates for Medicare beneficiaries, 1998-2008. , 2011, JAMA.

[6]  D. Lee,et al.  Analysis of overall level of evidence behind Infectious Diseases Society of America practice guidelines. , 2011, Archives of internal medicine.

[7]  W Katherine Yih,et al.  Intussusception risk after rotavirus vaccination in U.S. infants. , 2014, The New England journal of medicine.

[8]  Hoangmai H Pham,et al.  Care patterns in Medicare and their implications for pay for performance. , 2007, The New England journal of medicine.

[9]  Susan E. Sheridan,et al.  Patient-powered research networks aim to improve patient care and health research. , 2014, Health affairs.

[10]  W Katherine Yih,et al.  Integrating clinical practice and public health surveillance using electronic medical record systems. , 2012, American journal of public health.

[11]  Mark V. Williams,et al.  Rehospitalizations among patients in the Medicare fee-for-service program. , 2009, The New England journal of medicine.

[12]  R. Califf,et al.  Scientific evidence underlying the ACC/AHA clinical practice guidelines. , 2009, JAMA.

[13]  D. Blumenthal,et al.  The "meaningful use" regulation for electronic health records. , 2010, The New England journal of medicine.

[14]  M. Kahn,et al.  Data Quality Assessment for Comparative Effectiveness Research in Distributed Data Networks , 2013, Medical care.

[15]  K. Mandl,et al.  Patients treated at multiple acute health care facilities: quantifying information fragmentation. , 2010, Archives of internal medicine.

[16]  Adrian F Hernandez,et al.  Comparative risk for angioedema associated with the use of drugs that target the renin-angiotensin-aldosterone system. , 2012, Archives of internal medicine.

[17]  Lucy Savitz,et al.  Challenges in Using Electronic Health Record Data for CER: Experience of 4 Learning Organizations and Solutions Applied , 2013, Medical care.